My D.R.E.S.S Syndrome Adventure

 Horrendous night, around 4am I awoke feeling extremely itchy and restless. I decided to go downstairs so I wouldn't disturb the Wife sleeping, covered myself in E45 cream and sat with the back door open drinking a coffee with a pint of water to chase it down. I eventually felt settled enough around 530am to go back to bed, up again at 630 when the alarm goes off so naturally I have spent the day tired.  Managed to get out of the house for a few odd jobs, took it easy. Nice hour and a bit of fresh air in the sun (I'm applying factor 50 daily now) in the evening watching the youngest at football training and then it was off the the Brother In Laws for Tea. Quite late when we got back so not long before we got into bed. Not a bad day considering I was tired. 

 I set myself 2 simple tasks to complete today; 1, get in the loft and get the suitcase out and 2, go to Asda for sausages and spuds, both tasks left me extremely out of breath so maybe I set my sights a little too high. Felt really itchy again, I've drank loads of water, coffee, used the creams etc but it's still there, mostly I avoid the urge to scratch, I know full well it won't help, but sometimes I give in and claw myself stupid. A coolish shower before bed seems to calm it down a little, enough to allow me to settle atleast.  Let's see what the night has in store.

 I can feel myself getting stronger, which is great, but I'm still getting out of breath easily, which is frustrating, I would like to just be able to walk up the stairs without feeling like I've been for a jog around the block. Pottering around the house doing jobs keeps me occupied and stops me from scratching too much but I just run out of jobs to do that I can do on my own. The itching today has been unreal, I do still have the rash but it's not as bad and weird as it might sound it feels like the itchiness is below the skin. I've got 3 different prescription creams/ointments that I'm applying when needed but they only help for a very short while, it's driving me mad, I'm going to have to start wearing mittens. The itching seems worse when I'm warm so trying to keep as cool as possible.  Nighttime seems to be the worst time for it, hopefully it will calm down after the antihistamines or atleast I'll just fall asleep. 

 Not much to report today. Phoned the doctors to get booked in for blood tests to check my liver reading, booked in for next Monday, was hoping for sooner but oh well. Pottering about as usual, did a small bit of food shopping. Picked the youngest up from school and took him for his swimming lesson.  Still getting out of breath walking. Food, Telly, Bed

 Oldest son has an athletics comp today, so about lunchtime we head to the track and watch. we know quite a few people through the kids doing Athletics and its nice to see people and be out and about, that is one thing I was craving when I was in the hospital and that was to get out in the fresh air more instead of being stuck inside. once home the rest of the day is spent chilling in front of the telly, the Wife did overtime late last night so is tired and I have had a lot of fresh air. Food, Telly, Bed

 up early today, we are going out for breakfast with my Brother in Law and his Girlfriend, all you can eat, that's my kind of party. after breakfast the youngest has football training at the park so we're dropped off and I sit in my chair watching, chatting and enjoying the fresh air, luckily the rain that has been threatening all morning holds off just until the end and we make it into the care relatively dry. still out of breath walking, still feeling tired. back home for a chill day. another visitor today, one of the football family come to see us, says I look better than she was expecting, not quite sure how to take that. Food, Telly, Bed

 Up, pills, breakfast, get dressed. I have a Dermatology appointment today, I'm gonna drive but I'm going to take my Dad in the car with me in case I get to tired and can't drive back, Mum is going to stay at mine to watch Theo and weed my garden. The Dermatology Doctor is a nice guy, unfortunately he can't really answer my questions, DRESS syndrome is rare so they dimply don't know, I'm prescribed some more cream and he will see me in 3 weeks time. Frustrating but what can you do.  potter about for the rest of the day. food, telly, bed

 Groundhog day. Up, pills, breakfast, get dressed. Youngest still of ill, wife at work, potter about the house and do a few jobs, have some rest. I'm going to get my hair cut today, help myself feel more human again, the plan was for the wife to take me in the car (she works half days Thursday), however, with the youngest at home ill I'm either going to have to take myself or wait for another day. I drive myself, no issues with driving, apart from the cost of fuel, 199.5p a litre! I can't park close to the barbers so I park about 150m away and walk which means I arrive at the barbers extremely out of breath, now I've been going to this barbers for a very long time so I know them very well so of course they know something is up and they ask, I tell them briefly what's gone on and to say they are shocked is an understatement.  The only problem with my hair cut is that it shows off my "moon face" from the steroids but I do feel better for having my hair cut. ...

 Pretty much the same today, wake up, take medication, have breakfast, get dressed. Potter about again today, I've got the youngest here off ill but he's staying in his bed. A couple of visitors again today repeating the "take it easy, don't do too much" but I'm alright, I'll get there.  Speak on the phone to the Rheumatology nurse, just go through the email, what happened, recovery, support etc and possible options to look for a new arthritis treatment, I'm not keen at the moment, I don't know what any future treatment I will be keen to pursue, I don't want to risk a repeat of this. I'm a football coach in my spare time and tonight it is training for my Oldest sons team, I'm not up to coaching but I'm going to go down and sit in my chair and watch, see all the players and parents and get some fresh air. So we went to football, walking to the pitch from the car was hard, my legs felt unsteady, I was slow and although it was maybe 20...

 Was lovely sleeping in my own bed, although I did get restless and disorientated at 1 point and the warmth of the Duvet caused me to itch quite a bit, I'm up before anyone else is, they've got school and work, I make the Wife a coffee and bring it up to her, it will help to wake her up and its something I try to do everyday, I'm going to enjoy my first day of normality.  I potter about, get the washing up and some laundry done and put away, I have to sit down and rest tho, I can definitely feel a change in me, I'm slower, walking up the stairs is more difficult than I remember. I speak to my doctor on the phone and explain what has gone on and read her my discharge notes, she signed me off for a 2 week period with a view to review and extend if necessary, no one knows what the recovery is going to be like, how long it's gonna take etc, it took 5 weeks for the reaction to to show so god knows how long it will take to disperse fully. I also email my Rheumatology nurs...

 I'm optimistic today, I have had a good weekend, no fever, no cause for concern and I feel better in myself and more confident. Breakfast was porridge and an absolute mound of toast so my appetite is definitely not suffering today. The ward doctors are very pleased with how I'm recovering and how well I look, my liver reading is around 130 so definitely improving just waiting for Rheumatology as the decision will be made by them. 2.51pm and the Rheumatology doctor is happy for me to be discharged and come home today, I kid you not I cried. Mum and Dad visit at 3 and it's nice I can give them the good news. Apparently I'll be discharged around 6 so the wife is going to come up and break me out. I'm so excited I'm telling everyone.  7.15pm and I'm finally given my medication and told I am free to leave, it's a long walk to the car, I'm slow, tired and out of breath, I've got bambi legs but I'm so happy, we pick the oldest up from athletics and...

 The usual routine, Brew, Breakfast, washed, change of clothes/Pyjamas. I've not had a fever through the night which is great. I've been prescribed new creams which I'm applying and not only is my skin tolerating them they appear to be making a massive improvement, I nearly look like my normal self. Both boys visit today bringing Father's Day Cards, Presents and Cake, I'm very lucky

 Well, I can't believe I have woken up as the Father of a 16 year old, I'm gutted to be missing his special day but he should have a lovely time, the Wife was up till 3am decorating the house and preparing everything with the beforementioned good friend staying until 2am to help, I think she has earned so many friend points by now that she will never ever run out. By the sounds of it everyone will be rallying round to make sure he has the best day ever. I video call with him a few times throughout the day, he has visitors all day so he looks like he is having a nice time, I'm on video call when they do his cake and you can even see me in the pictures, thank god for modern technology, I'll see him in person later on at visiting time. I'm feeling positive today though, a night free from fever so that's a definite improvement and a step in the right direction. Visiting time and I have Birthday Cake and Pork Pie, heaven, they know how to look after me my family.

 Tired again this morning, couldn't get comfortable despite moving the bed into every position I could. The swelling has improved on my face but it's on my neck and I can feel the pressure on my windpipe, my observations were made more regular as a result of this which didn't help with my rest, luckily my oxygen levels stayed good and didn't need any intervention.  My Wife is going to accompany me to the other hospital for my biopsy in a taxi, at least I won't be alone and we get to spend extra time together outside of visiting hours, I know I've seen her everyday but I'm really missing her so it's nice. I have developed what looks to be whiteheads all over my body, I'm hoping this isn't going to turn out to be acne. A very Good friend came to visit this evening with the Wife, I'm a bit upset, it's My Oldest sons 16th Birthday tomorrow and I'm going to miss it, luckily said friend is going to help the wife prepare and decorate the hou...

 A rough night, hardly any sleep, a combination of steroids and an unruly patient making too much noise, I can't understand why you would choose to be abusive to Nurses and Healthcare Assistants, some people are just thick. Even more emotional today, I have woken up to an extremely swollen face. I can just about see, I'm not taking this well, I close the curtains around my bed and shut myself away ,curl up on the bed and cry. I refuse breakfast, a brew and I just want to be alone. It isn't until the nurse comes in and needs to do my obs that I show anyone my face, she fetches the doctor who checks me out and orders me onto another steroid, again via IV to deal with the swelling, I'm devastated, I'm swollen from fluids and more fluids is not what I want but I have to trust them. I keep getting myself into a state but when I cry it feels as if my tears are just going back in or staying in my eyes, I know I need to try and stay strong but I'm struggling, massively....

 No fever during the night which is a massive improvement but I've woken up this morning to a swollen face, apparently it's a normal reaction to the steroids, it's very slight to begin with but we will see how it progresses. Had a new canula fitted, somehow during the night I have manage to rip it out.  Feeling extremely emotional today, the slightest thing is setting me off crying, not sure whether it's emotions or all the fluids I've had pumped into me. More bloods taken, usually I'm good with needles but I'm really struggling lately. Lots of doctors today, ward doctors and Rheumatology including the Rheumatology consultant. The swelling is definitely getting worse as the day goes on, its in my mouth now, swallowing is becoming painful and difficult, 4pm and I look like a fat Danny Dyer. My Boss came to visit, was shocked at the sight of me but we have a nice chat and he's bought me a little care pack he had made up. Visiting time with the Wife, the sw...

 About half 2 in the morning I'm shivering again, I press the buzzer straight away this time, forget the dressing gown, I know what's going on, it's fever time.  39.6, heart rate 130 and rising, the nurse has called a nurse practitioner from another part of the hospital to see me, they want to start me on antibiotics because me white blood count is wrong? She's not happy with my care so far and wants a consultant to see me ASAP, she's not sure if my blood count is because of the steroids I'm on or what. The doctor comes, it looks like she's gone and fetched him herself they have a discussion and I'm being moved before any treatment, they don't want to treat me all the way at the other end of the hospital incase I have a bad reaction so I'm waiting for a porter to arrive and I'll be off. Porter arrives with a chair, the Nurse isn't having that, she wants me moved on the bed as I won't manage a chair. I'm deposited in the AMU (Acute...

 Between 3 and 4 I wake myself up shivering, I mean bad, if I was to hold a bowl of eggs they'd be scrambled without needing a whisk. I don't know what is going on so I put my dressing gown on and get back under the covers and try to get warm, well, the shivering got worse so I pressed the buzzer to call the Nurse who straight away does my obs and checks my temperature.  41.6 and back onto an ECG cos I'm Tachycardic again. I'm coughing aswel now which is new. The nurse puts a new canula in my arm, it's a bit messy and bloody because I'm stripped off and shivering and can't stay still but it's in and I'm put on IV paracetamol, more bloods and a covid swab, the doctor is paged but I'm not expecting a visit. My temperature is coming down, I've stopped shivering and my heart is no longer trying to beat out of my chest but I'm knackered. I get up to go to the toilet, I make it there, albeit a bit weak and dizzy, it's the way back that is t...

 The Calm Before the Storm A Temporary Lull in Battle The quite period before the kids are home from school.  The above times can lure you into a false sense of security. Apparently I was optimised for discharge, well enough to be moved to the far end of the hospital where I didn't require much care, waiting for that moment that I can be signed off and sent home. WRONG it's Sunday, it's my Wife's birthday so I'm already feeling shitty about that, I should be waking her up with breakfast in bed and a brew, making sure the boys give her attention and just generally trying to give her the best day possible but little did I know I'm about to get worse, quickly.  Mum has tested positive for covid, that's a worry, I'm hoping that I haven't caught it, I'm hoping the wife and kids haven't caught it and I hope she doesn't get seriously ill herself. About 11 I start with a fever, I'm given paracetamol and placed on an ECG, my heart is racing, T...

 Well Saturday mornings seem to be a somewhat more relaxed affair, no doctors rounds on the weekend so relatively quiet, Nurses and HCAs continue as normal. Toast for breakfast again, don't really fancy Cereal or Porridge, shame a full English isn't on the menu because I'd smash that down my neck at warp speed. Tired this morning, guy in the bed opposite snores like a a pneumatic drill and shouts in his sleep, the Wife is gonna sort me some ear plugs, hopefully they work. My youngest sister, bless her, helping me out, it's my Wife's birthday tomorrow, I messed up and didn't prepare for it and then got ill, feel like a humongous douchebag. Between us 2 we have a plan so at least we'll get something sorted. Oldest son has an Athletics race today, normally I go and watch but obviously not today. Youngest sister arrives for visiting with my oldest nephew, I sign out of the ward and we go for a walk to the entrance of the hospital, I want some fresh air but going...

 Woken up and its the usual morning commotion, the Nurse is round doing observations, water jugs being refilled, coffees being deposited bedside and then breakfast. Toast for me, just butter followed by about 9 tablets. More bloods taken, now I've always been alright with needles, I'm a blood donor, I've donated blood 14 times and apart from my very first time it's never bothered me, I know which of my veins is the best, I can watch the canula/needle go in and watch the blood come out but these past couple of days I can't watch, I feel light headed, I hate it, completely 360 on my feeling towards it. A porter arrives with a chair, one of those strange hospital chairs that only the select few can push forward without playing dodgems off the walls, this guy isn't 1 so it's backwards I go and I'm off for an Ultrasound. Ultrasound guy is cool, has a good look at my organs, they all look alright, spleen is a bit enlarged he says, and I appear to have an extra...

 The morning commotion starts with breakfast, cereal, porridge or as much toast as you can manage.  My breakfast is followed by more bloods being taken and being told I'm moving to another ward but not yet, as the bed isn't quite ready. Guess I'll grab a wash then seeing as I have time, atleast if I freshen up a may feel a bit better but I'm stopped, gotta move now. I'm taken in a chair to the new ward, unfortunately when I get there it turns out there has been a mix up, the powers that be, that play Jenga with the patients and beds have jumped the gun, the bed I'm waiting for isn't going to be free until at least lunchtime and the bed I have left has just been filled. I'm spending some time as a surge patient, I am sat in a comfortable enough chair by the nurses station whilst I wait, I'm well looked after mind you, coffee, water, food, observations and I manage to see the doctor and had a visit from medical photography to take some pictures of my r...

 It's Wednesday, I've been sat in A&E since 4pm yesterday.  Luckily it wasn't busy overnight but still, I couldn't sleep, how could I, I was in a chair in a waiting room. I spent the night talking to a lovely gentleman called Derek, he was waiting for a bed too, but they hadn't even started him on treatment, we keep each other company throughout the night just chatting away the hours. Derek's wife turns up with a bacon sandwich for Derek and like an angel has made 1 for me aswel, I know it's only a bacon sandwich but wow, what a kind thing to do, apparently she had told the Wife the night before she would bring one but I was completely oblivious to that. My Wife turns up after the school run, she's obviously tired but she's bought me some bits and pieces, she's a goodun. The A&E doctors call me in, they want to send me home with some antihistamines for my allergies and a follow up appointment with my doctor, however, I'm top of the li...

 Well, last night was rough as toast, fever, retching, restlessness, sweats, shivering.  Woke the entire house up with my retching (I'm a very noisy spewer) Messaged my boss, told him I won't be in cos I'm in absolute clip. Managed to get up and take the kids to school, but it wasn't easy and when I got home I just curled up on the sofa and went back to sleep until I'm woken by the wife and taken up to bed where I just sleep and shiver and sweat. About half 3 in the Afternoon, Mum and Youngest sister come round and between them 2 and my wife they convince me that I need to go to A&E and get seen to, I'm stubborn but even I realise sometimes that you can't just ride something out so off we go. At A&E I tell them I think I am having a reaction to medication.  A&E send me to UTC (Urgent Treatment Centre) they check me out, I do a urine sample and they send me back across to A&E In A&E I have bloods taken, an ECG and I see a doctor who althou...

 Still not the best, manage to get myself up, normal routine of paracetamol and a squeeze of an energy gel down my neck, I've got stuff to do, I need to go to work, I have a blood test relating to my medication and I need to speak to the doctor. I do the school run and come home for a shave ready for work and this is when I've noticed this rash I am absolutely covered in, it just came out of nowhere.  I send an email to my Rheumatology nurse, listing whats wrong with me, i need advice, I'm starting to think this may be a reaction to my medication and not the flu, off i go for my blood test. The nurse phones me mid blood test and advises me to stop taking my medication (Sulfasalzine) and to get in with the doctor for a check up ASAP, doctor echoes what the nurse says, stop taking the Sulfasalzine and if I get any worse go to A&E. I just about manage the rest of the day, this evening I have a Football Managers meeting that I need to attend. Attended the meeting, several c...

 Still ill, still testing Negative for covid, appetite more or less non existent.

 I know it takes time to get better but I'm feeling worse, most of the day is spent shivering under a blanket, eyes are extra sensitive to the light, night time is just as bad, shivering in bed but so warm, fevers suck, and I seem to have developed a cough that leads to retching, but all I seem to be bringing up is phlegm/mucus.

 So, sods law, it's a nice long bank holiday weekend for the Jubilee, weather looks like it's going to be lovely and I think I'm coming down with the FLU or something, I'm Lethargic, bit of a temperature, eyes are itchy and puffy, sensitive to light and I just generally feel like crap It's nice weather and I've got a hoody on. I follow all the usual self help; fluids, paracetamol, rest, Covid Tests (negative), just gotta ride it out.

 Hello My Name is David Earlier on this year, after suffering with many different aspects of my health I was diagnosed with Psoriatic Arthritis. The Psoriatic Arthritis affects my hands, elbows, back and bowels. I keep myself fairly fit and healthy and aside from the arthritis I don't really have any medical issues, I lead an active lifestyle, I coach football and I like to Walk, Run, Mountain Bike, all without much difficulty. I was started on a medication called Sulfasalazine approximately 5 weeks ago, I had to step up my dosage whilst watching for any side effects. The medication was not expected to take effect and work until between 2 and 3 months but apparently its a very safe and effective medication and side effects are rare. The following blog details the reaction I had towards this medication and the subsequent complications, treatment and recovery. Thankyou for reading, please feel free to leave me a comment or a question. David